A woman who is carrying twin girls with a fatal
foetal abnormality has
appealed to
the Northern Ireland Minister for Health Edwin Poots to allow her have an
abortion in Northern Ireland.
The woman, known as Laura, who is almost 22
weeks pregnant, said she was very recently informed that her babies
have anencephaly and had no chance of survival. She is now
arranging to travel to England for an abortion.
The case of another Northern Ireland
woman, Sarah
Ewart, who
had an abortion last week in London for a baby with the same condition at 20
weeks has recently been highlighted by the BBC’s Stephen Nolan.
The 1967 British Abortion Act does not apply in
Northern Ireland, where termination is permitted only where it is ‘necessary to
preserve the life of the woman or there is a risk of real and serious adverse
effect on her physical or mental health, which is either long-term or
permanent’.
Currently only about 40 abortions are performed
in Northern Ireland each year although 905
women from
the province had abortions in England Wales in 2012.
A consultation is currently taking place about
changing the guidelines on abortion and Minister of Justice David Ford
has said that there is a need to widen it ‘to look at
difficult issues like foetal abnormality to see if where the law is currently
drawn is in the right place’ (see also here).
Anencephaly is a severe form of spina bifida
where a failure of fusion of the neural rube in early pregnancy results in the
baby developing without cerebral hemispheres, including the neocortex, which is
responsible for cognition. The remaining brain tissue is often exposed, ie, not
covered by bone or skin (see diagram above).
Those babies who survive to birth almost all
die in the first hours or days after birth. There is no curative treatment
available, only symptom relief.
Anencephaly is not uncommon, occurring in 1 out
of 1,000 pregnancies, but only 3 out of 10,000 live births. Over 95 percent of
parents opt for abortion in countries where this is legal and 208
babies with
the condition were aborted in England and Wales in 2012.
One cannot hear these tragic testimonies
without being deeply moved by the emotions expressed. There are few things worse
than losing a child and it is a huge thing for a mother to carry a baby to term,
knowing that it will be born with a terrible deformity and die shortly
afterwards.
It is perhaps not surprising therefore that the
media coverage of these recent cases, along with the public reaction, has been
overwhelmingly supportive of the decision to abort and that there is now growing
pressure for a change in the law.
Very few people, even doctors or disabled
people’s advocates, are willing to express a contrary opinion, and I do so only
because I believe that the issue is so important that the arguments for the
contrary position need to be heard.
Before I qualified as a doctor I probably would
have taken the generally expressed view, but an experience I had as a junior
doctor dramatically changed my attitudes both to disability and
abortion.
More on that later, but first, at the risk of
being accused of trying to defend the ‘indefensible’, let me give twenty reasons
why I believe parents (and doctors) should think twice about aborting a baby
with anencephaly, and why I believe we as a society should be advocating an
alternative approach. I would stress that this is my sincerely held personal
view.
1. A baby with anencephaly is a human being.
Our humanity
is not diminished or degraded by sickness, disability, fragility, intellectual
impairment or by what people think of us or how they value us. Babies with
severe conditions like anencephaly are human beings worthy, like all human
beings, of profound wonder, empathy, respect and protection.
2. A baby with anencephaly is not brain dead.
Babies with
anencephaly, although not conscious, are not brain dead. Their brainstems are
functioning at least in part which is why they can breathe without ventilators,
often survive for several days and are not permitted to be used as organ
donors.
3. A baby with anencephaly is a dependent
relative. Babies with anencephaly are profoundly
dependent but are also biologically related to their parents and carry their
genes. They are therefore dependent relatives and so should I believe be treated
with the same love and respect as any other dependent and dying close
relative.
4. A baby with anencephaly is a disabled
person. Babies
with anencephaly are profoundly disabled and have special needs. They are also
people because personhood is not contingent upon intellectual capacity or
function but conferred on every member of the human race. They are therefore
just profoundly disabled people who should be treated the same as disabled
people at any other age. There are other causes of similar brain dysfunction
including birth asphyxia, trauma, stroke and brain tumour.
5. Palliative care is the best response to
terminal illness. Babies with anencephaly are human beings with a
terminal condition. They are dying babies for whom no curative treatment is
possible. The appropriate management in treating patients in this condition is
palliative care – food, water, warmth, human company and symptom
relief. Perinatal
hospice is a
wonderful concept that should be promoted much more widely.
6. We should not be making judgements about the
worth of other people. None of us has right to make value judgements
about the worth of another human being; especially when that person is unable to
express an opinion about the matter. Equally we do not have the right to end
their lives regardless of what burden we perceive they impose on us.
7. Abortion for anencephaly is discriminatory.
Anencephaly is
usually diagnosed at the time of the 18 week anomaly scan so abortion is
inevitably later than this. Most people however strongly oppose abortion beyond
20 weeks. The recent parliamentary
inquiry into
abortion for fetal disability (Bruce Inquiry) concluded that the current law on
abortion for severe disability was discriminatory in two ways. First it allowed
abortion up until 24 weeks for able-bodied babies but until birth (40 weeks) for
disabled babies. Second it allowed abortion for babies with significant risk of
a serious abnormality, but not for those with lesser degrees of special
need.
8. Abortion for anencephaly is often a coercive
offer. The
Bruce Inquiry revealed that there was a strong presumption from doctors that
parents with disabled babies would choose to have them aborted. This led to a
huge amount of subtle or direct pressure being placed on parents who decided not
to abort. They were repeatedly asked to reconsider their decisions and treated
like pariahs – in short they were discriminated against. It is just this sort of
pressure that has led some commentators like Melinda Tankard
Reist to
talk about abortion for disability as a ‘coercive offer’. Reist’s book ‘Defiant
Birth’ tells
the personal stories of women who have resisted ‘medical eugenics’ and dared
to challenge the utilitarian medical model and mindset.
9. Abortion for anencephaly is contrary to
every historic ethical code. Historic codes of medical ethics such as the
Hippocratic Oath and the Declaration of Geneva prohibit abortion. The latter
states as one of its central tenets, ‘I will maintain the utmost respect for
human life from the time of conception; even against threat I will not use my
medical knowledge contrary to the laws of humanity’.
10. Abortion for anencephaly exchanges one
problem for a whole set of different problems. Abortion may appear to offer a solution but the
mother is still left to deal with the guilt, emotional trauma and unresolved
grief of loss of what is almost always a wanted baby. These inward scars may
take a lifetime to heal.
11. Saying goodbye properly is important for
resolving grief and achieving closure. Achieving effective closure after the loss of a
baby is best achieved if parents are able to spend time with their dying, or
dead, baby, saying what they would have wanted to say and treasuring the
precious moments. Covering the baby’s head with a woollen cap may enable them to
focus on the eyes and face which are usually normal to look at (see
the story of
Rachel). ‘Saying
Goodbye’ is
a charity which is running very welcome thanksgiving services for couples who
have lost babies before or after birth.
12. Abortion for anencephaly can be profoundly
damaging to a mother’s mental health. Mothers who abort babies for fetal abnormality
are highly susceptible to mental health problems afterwards. This is because the
abortions are late, the babies were generally ‘wanted’, an emotional bond with
the baby has usually been established and there has been no opportunity properly
to say goodbye. There is a better way than abortion.
13. Pregnancy is the most intimate form of
hospitality. A
mother’s womb offers protection, warmth, shelter, food and water within the body
of one’s closest relative. There is no form of hospitality that is more intimate
or more suited to one whose life is going to be very short.
14. There are real dangers of incremental
extension once we embark down this route. The British Abortion Act 1967 was driven
through on the back of the thalidomide disaster and was meant to authorise
abortion only in severe circumstances. Now there are 200,000 abortions a year
with one in five pregnancies ending in this way. Babies have been aborted for
cleft palate and club feet. Recent
statistics showed that between 2002 and 2010 there were
17,983 abortions of disabled babies in Britain. The overwhelming majority of
these were for conditions compatible with life outside the womb and 1,189 babies
were aborted after 24 weeks, the accepted age of viability.
15. Deformity does not define us.
Our worth as
human beings is independent of any disabilities we might have.
16. Easing our own pain is not sufficient
reason for ending another person’s life. Given that babies with anencephaly do not feel
pain, the question has to be asked whose pain their deaths are actually
relieving. Any interventions should primarily be aimed at benefiting the babies
themselves.
17. Anencephaly forces us to acknowledge and
face our deepest prejudices. In a society that values physical beauty,
athletic prowess and intellectual capacity highly it is easy to see why babies
with anencephaly are low down the pecking order. They fall foul of our deep
societal prejudice toward people who are ‘ugly to look at’, ‘unintelligent’ and
‘physically inept’. The only effective way of overcoming such prejudices is to
cultivate attitudes of compassion and care for people with severe disabilities.
Caring collectively for those who are suffering, disabled and dying makes our
society less selfish.
18. Major life decisions should not be made at
a time of crisis. Major life decisions, like choosing to abort
one’s disabled baby, should not be made at a time of great emotional trauma.
Parents need to be given the time, space and support necessary to make an
unpressured and unhurried decision and need to be told that keeping the baby is
an alternative option for which full support will be given.
19. We should not allow ourselves to be
manipulated by the media or those with an agenda. I was deeply shocked that the BBC
would interview a deeply traumatised grieving woman who had just heard the most
devastating news of her life in front of a national audience just days before
one of the most horrendous experiences a woman can go through – aborting her own
baby. More than this, such hard cases should not be used by media presenters
with a wider political agenda of liberalising abortion laws (see Melanie
McDonough in
the Spectator). This was I believe both exploitative and abusive. Huge
sensitivity is also needed with the language we use. These are babies living
with anencephaly. They are not ‘anencephalics’, ‘dead babies’ or ‘non-persons’.
These are dehumanising terms. Just as we would not accept the terms ‘spastic’,
‘moron’, ‘imbecile’ or ‘vegetable’ to describe human beings, neither should we
accept these.
20. Death is not the end. I have attempted to address the
points above to a general audience but allow me one explicitly Christian
argument. As a Christian I believe that human beings are made for eternity. This
earthly existence is just the ‘Shadowlands’. So when we think of loved ones, who
have died with dementia, we do not think of them as they were but as they will
be. Because of Christ’s death and resurrection we look forward to the
resurrection of the body into a world where there is no dying, mourning, death
or pain. In this new world there will be no anencephaly. The Christian ethic is
to treat all people as we would treat Christ and to treat others as Christ would
have done. The bottom line is that we should treat babies with anencephaly as if
they were Jesus himself, and treat them in the way he would have
done.
I mentioned above an experience I had as a
junior doctor which changed my attitudes to abortion and disability.
The administrative clerk on the medical ward
where I was working was heavily pregnant and I asked her when she was due. She
gave me the date and before I could say anything else said, ‘my baby has
anencephaly’. While I was inwardly asking why she had not had an abortion, she
added, ‘I could not bring myself to end the life of my own baby’.
The baby was born a few weeks later and
survived about a week. She held it, nursed and cared for it and said her
goodbyes before its inevitable death.
Up until that point I had not contemplated that
such an approach was even possible. She not only demonstrated that it was but
taught me a huge lesson about courage, compassion and how to face and handle
tragedy, grief and bereavement. I have never forgotten it and resolved then,
that if I was ever in the same situation I would want to do the same.
I have heard many similar testimonies since
from women in similar situations who have made similar decisions and have become
even more convinced that this is best way to handle it (See
testimonies here, here, here, here and here and resources for parents here).
Having a baby with a severe disability changes
one’s life forever whatever choice one makes. But choosing to offer the
hospitality of pregnancy and a mother’s care and compassion to a dependent and
severely disabled relative, and to be willing to shoulder the inevitable pain of
separation and bereavement, is I believe the best way through this tragic
situation.